Dementia and Daily life

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No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.

Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.

After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.

When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.

A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”

I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)

After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.

Carpe 4:20 AM Diem. (I could not resist.)

Post Furniture Arrangement

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Oct 9 & 10 2022

I worry more and more about Cheryl’s odd evening behaviors. Quite often afterwards she “wants to go home”. It breaks my heart that she doesn’t know who I am in the evening. It breaks my heart that I cannot find a solution to helping her get out of those behaviors.

I think I have my own anxieties about helping her at home. I did in the Spring when she seemed to be “off on some cloud” about something in the evening. The dementia experts will tell you to confirm and acknowledge the weirdness. That can be really really hard to do. They do not use the word weirdness that is my word for it. I mentioned to my sister-in-law that I am too much of a linear thinker to simply acknowledge and acquiesce this behavior. Maybe I have too much background anxiety about what is next?

The term used for this evening behavior is sundowning(er) syndrome. The Mayo Clinic has this to say. And the National Institute for Health offers these tips to combat it.

It is great that healthcare providers and institutions recognize it as a thing and give it a name. It still gives me anxiety.

Tonight which is pizza Tuesday, it seems to be easing but whether it is or is not will not be known until an hour from now.

Carpe Diem.

It is an hour or so later and it is looking good.

4:20 AM update – 🙂 – there was a problem with the computer that drove her awake. (There was not.) It took a bit of convincing and me doing a pseudo-visit to the computer, she settled back down to sleep.

Furniture Rearranging

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It is possible that my thought about how to better utilize our space will cause me great heartache. I asked my son and grandson over to do a bit of furniture rearrangement. We do not seem to be as focused on the television as we once were in an earlier part of the journey with Parkinson. Stimulus money from two different administrations left us with new furniture and extra sleeping facilities. The living room remained focused on the television like some early 1980’s sitcom living room. I wanted to change that look. I read mostly but there are a couple shows I like to watch. Cheryl rarely sits for more that 20 minutes to watch anything. She seems to struggle with any story line in any show. So the television is no longer a focal point.

I turned the whole room 90 degrees with the help of my son and grandson. We moved the dining area around a bit also and now the walkways are a little wider to allow for walkers and mobility aids. I have made one slight adjustment. Her recliner is electric and I put it closer to the wall to hide the cord. I have since moved her recliner to the other side of the end table (away from the wall) and hide the wires under my chair and the end table (side table). Her chair is now approximately in the same position as it was previously just turned about 90 degrees. She is comfortable with that position.

She asked me if we need to notify anyone of our new address and she wants to know if she will need a new key. Moving the furniture around makes her think that we have moved to a new condo. I told her that I had the locks keyed like the old ones so no new keys were necessary. I also dutifully instructed the kids and neighbors of our new/not new address.

Dementia is amazing in its scope. In Cheryl’s case location in time and space are intertwined. If I knew the phone number for heaven I could help her call her mom. Sometimes she wants to do that.

Heaven’s phone bank – Hello Heaven. Gabriel speaking. How may I direct your call?

Carpe Diem.

Hallucinations, Delusional behavior, The presence of others = Caregiver frustrations

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Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.

Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.

Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.

Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.

I did not have an answer suitable for her to be okay with so I kept my mouth shut.

Sometimes in the moment seizing nothing is a good idea to maintain namaste.

Carpe Diem.

We Got There!

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When she is running on parkie time and I manage to get her to her exercise class on time without arguments, mostly none, I get a feeling of pride of accomplishment. Seek accomplishment in the small things of life and bigger things will follow. Or I think that they will.

There are lots of life plans and platitudes similar in sentiment. Keep track of the pennies and the dollars will take care of themselves- is one from the business world. Manage the little things and big things will come your way. Yadda Yadda Yadda.

She seems to be enjoying class. It consists of a group of boxing like motions while seated. A similar class uses dancing moves. The constant motions raises the heart rate.

Friday is always a bit tricky since the class that she likes is at 11 am. All other classes are at 12 pm and later. Generally her best time of day is 10 am until about 7 pm.

Carpe Diem

Part of a Study

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Pfizer is conducting further trial testing of a mRNA style flu vaccine. Their ad popped up on Facebook a few weeks ago and I answered it.

The first visit about 3 1/2 hours long was taken up with health history and all the normal blood related questions. After the initial interview an official doctor, he had a stethoscope draped on his neck, came in to ask many of the same questions. Good cop, Bad cop? I think that we were waiting for the vaccine to melt. A third person came in to train me on how to label nasal swabs that I needed to do if I felt like I caught the influenza virus from somewhere. Eventually another came to a blood draw. And another came to inoculate me with the double blind test substance. Every day in the evening for 7 days I have to report any and all symptoms on an app. I waited 30 minutes after the jab to make sure death evaded me.

I returned home to the cookie mess. Cheryl had decided to make more Christmas trees but had run out of gas, strength, linear thinking and wherewithal to complete the cookie dough. I guessed there was not enough butter and no flour in the mix. I saved the cookie dough but put them in the oven for too long. Probably should have been 10 minutes not the 13 that I had selected because I thought it was 15. The cookie expert (Cheryl) always says, set the oven for a couple minutes short and look at them. (The recipe words were nowhere to be found.) Oh well, I like crunchy cookies. She likes soft cookies which I think are under done.

Afterward Cheryl recognized that she could no longer make cookies on her own. Or she at least expressed it that way to me. Today she probably does not remember that at all.

Carpe Diem

Ought, Cough, Bough

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Wordle is a game that makes me happy. I found that thought in my head after finding the wordle answer a couple days ago. It matters not that I needed one guess or five guesses. There is no competition. (And yet there is someone on the World Wide Wait that needs to explain to me why it is popular.) It is a personal challenge. It is the first thing I open on my tablet in the morning, well, almost. Sometimes the book I was reading the night before opens itself and I read that for a little bit.

Cheryl is semi-sleeping now. I checked on her. She is “trying to decide” about getting up. We have no scheduled activities or she does not. Actually I do.

Early in the morning while she is in this mode, I have time to look at other things, check email, see what folks are whining about on Facebook. Facebook has a strange way of posting things on my “news feed”. Calendar time seems to have little to do with it, maybe, nothing to do with it. It must be a complicated algorithm. Ho Hum. After determining that there are no email, Facebook or other emergencies, I move on. It amuses me to notice how many folks will post something on a group page which might better be solved by picking up the phone, I look at WordPress to think and gain some inspiration to add to this blog of mine.

The statistics page is often of interest since much of the display intrigues me. Today this little display in the corner seems to report that someone in Thailand looked at my blog.

That in itself is not strange. Type a random thing into Google and it returns all sorts of unrelated finds. But all seven views were of an old post I entitled “Things that make you Happy” and I reread it this morning. I found inspiration in my own words.

Over the past weekend we visited with my cousin Bettie and her husband Herb. It is always a great time with family and friends that we do not see that often. Bettie’s house is perhaps forty-five miles away south and east. It is a pleasant drive through the northern Kentucky countryside and for Cheryl it is a far away destination. On this particular weekend the hurricane that crossed Florida and came ashore at Georgetown, South Carolina had spread its cloud deck inland to eastern Ohio and Kentucky.

On the start of our trek it was bright and sunny. I aimed the car south and east towards Bettie and Herb’s place and drove under the cloud deck. Watching to sun go down from their front porch and side deck was magnificent. My son remarked to me that he had not seen a rainbow before. I do not know whether he meant ever or as brilliant as this one was. It was perfect timing for a follow up question but I did not ask him. Carpe the missed diem.

Like most things I have taken pictures of with the smartphone’s camera, the pictures do not capture the magnificent colors that were produced by nature. The rainbow produced by the narrow view the sun had of the under side of the cloud deck and upper misty air was brilliant and exceedingly bright. The pictures simply do not do it justice. But being there with family and friends and watching a unique sunset made me happy.

Happy to be alive and happy I was able to share the moment with Cheryl.

Carpe Diem

Parkie Time

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… is different than any other time.

I think that when I want to do something with Cheryl, parkie time shows up to slow things down. It is inevitable. She will say- let’s go or are you ready to go- or words that convey the sentiment that she is ready. Nope. That is a incorrect interpretation of the language.

If I stop to consider parkie time though it makes sense. I thought we were headed to the car. Actually we were headed to check on several stacks of paper in her office before we go. The thing about parkie time is that it has little to do with clock time.

There’s a period of hesitation while one remembers what is happening next and what is required for that activity. If I realize what is happening I can help but sometimes the help is unappreciated. It is a delicate balance of gentle help and unintentional stress. Memory loss mingles with confusion to create stress.

The important thing is to not respond to the smart-Alec comment or to make one. Running down the road jabbing at each other with pointed sticks does not accomplish much but admittedly can be momentarily satisfying to both. Resist doing that. The road is smoother. There is less apologizing later. Certainly there is less guilt at having trod all over someone’s emotions.

The disease is not them. It is hard to remember that in the rush for the door to leave and go somewhere.

Carpe Diem.

Grace

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Recently a classmate and friend of Cheryl passed away. Sister Mary Claire Hausfeld was not in Cheryl’s ICA class. Cheryl went to grade school with her and Mary Claire went to OLA high school. She found her vocation after high school. But that is not what I want to tell you about.

In a wonderful and well written obituary about Mary Claire and her life of service S. Delouise Menges writes about grace in Mary Claire’s life and how to recognize grace in our lives.

This poem by Marilyn Chandler McEntyre that Mary Claire used in prayer is a beautiful and touching meditation.

How to recognize grace

It takes you by surprise

It comes in odd packages

It sometimes looks like loss

Or mistakes

It acts like rain

Or like a seed

It’s both reliable and unpredictable

It’s not what you were aiming at

Or what you thought you deserved

It supplies what you need

Not necessarily what you want

It reminds you, you’re not in control

And that not being in control is a form of freedom

I have read this over several times and the line that strikes me most is “And that not being in control is a form of freedom”.

This life of Parkinson gives that statement new perspective. Little of our life is able to be controlled and I for one would like life to at least be predictable. It is not predictable either and that can be a form of freedom if you let it.

Carpe Diem.

October 2, 2022

Surrounded by Wonderful Loving People

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“Feeling blessed” – is a phrase I associate little with this disease of Parkinson but I am learning to understand the meaning of that phrase with respect to helping others and help from others. Cheryl used to tell her mother that there is grace in accepting help from others. (:-0) Once in a while I say this to Cheryl when she resists my aid.

It is easy to get caught up in “why me?” It is easy to not take note of all the kind and loving ways that people around you are willing to help in some small way. Most do not even hesitate. Wear your gray hair to the door of a restaurant and the guy coming the other way will hold it for you. Carry a walking aid or a cane to the same door and kids will jump up and open the door.

In our life with Parkinson we experience these small helps a lot. Cheryl wants to do for and help others even when they are helping her. There is goodness in everyone. Even when one is certain that the other person has not applied themselves and therefore did not achieve the expected benefit help is given without expectation of gratitude.

From the point of view of “little helps” everywhere often spontaneously offered to us, we are blessed.

Our friend Jane is a great help to me. She has organized a network of care around Cheryl and me. She has contacted many of the group of women that she and Cheryl used to play bridge with. Cheryl is unable to play bridge any longer. The game is simply too mentally taxing for her. We used to play Scrabble in the evening and I did not want to play because Cheryl would always, often anyway, kill me score-wise. With Scrabble and Bridge and other competitive thinking sorts of games, she excelled. Her math and logical brain rose to the challenge.

Jane and the rest have organized themselves into Wednesday visiting parties. Jane comes across the hall on Monday so that I can ride my bike or do whatever. Barb comes on the last Thursday of the month to take Cheryl to lunch. Cindy has been coming over on Thursday in the afternoon so I can go do whatever. I usually ride my bike in the warmer months. Linda has been coming on Wednesday but her sister is very ill and she needs to be with her. (She may not be with us much longer.) Jane is a blessing to us. As is Linda and Cindy and everyone of Cheryl’s friends.

Family …

My son and daughter-in-law have been a focus of my need to get Cheryl out away from our little condo on the weekend. David and Melissa are almost always available for a weekend visit. They live nearby in eastern Indiana. The drive to their place is such that I takes us through the fringe of the city into enough rural properties that here and there are planted corn and soybeans. It seems like a long trip to Cheryl. When we get home her reaction is much like coming home from a long trip.

A few evenings ago I invited a couple of Cheryl’s cousins for dinner. It was a great time. Steve and his wife Marisa sent an email just checking in on us a few weeks ago so I invited them for dinner. Cheryl insisted that I invite Lois who is another cousin from a different direction. 🙂 Lois, Steve and Risa did not know each other except through inference by family name(s). Lois and Steve are cousins to Cheryl but not to each other. Nevertheless the dinner was great. They found common reference by neighborhood. They physically do not live far apart.

Cheryl talks about Lois a lot and her mom Aunt Jean (great aunt). In her childhood she got a lot of hand me down clothes from that direction. Lois is a couple of years older. I may have mixed up the story a little. I am merely trying to track down some of these childhood stories before the people in them are gone. Marian and Tom, Steve’s mom and dad, are gone from this world. Their family is younger. I remember Steve as a boy coming to some of the long ago family gatherings at Sharon Woods Park. Lois is the last, I think, of her family. Her sister Maureen we used to see occasionally at Macy’s in Kenwood doing her supervisor shtick. She is gone.

As we move on and Cheryl resides mentally in her childhood, I have taken it upon myself to reconnect with these people. Many of whom I do not know personally except by my wife’s stories. And her memory is failing her in bits and pieces and fits and starts. I think it is becoming more urgent for me to do this and I do not know why I feel the need to do this other than it brings her great pleasure to talk and reminisce with her cousins. Her most pleasurable stories seem to revolve around the many large family gatherings and smaller group visits.

On my never ending journey to help Cheryl experience the best of her days even though Parkinson is trying to steal the memory of them from her.

Carpe Diem.